Wednesday, March 31, 2010

Relief @ Release

Mik is laying in bed beside me exhausted but relieved. She accomplished the "mission" required of her and we hope to be released from the hospital some time this morning. I expect getting the electrodes off her head will be the major task of the day. I survived! Five hours sleep a night, no natural daylight, fluorescent lights on 24 hours a day, a TV without a remote (sounds lazy but when it is across the room - you are the only one that can reach it - and you have to scroll through channels you will get it).

The thing that always amazes me about being here is all that is going on around that I am usually blissfully unaware of. The parents that are crying beside me because of a diagnosis. The little boy next door just screaming to go home. The worry on the faces...the exhaustion....the frustration of sharing a 4 x 4 kitchen with every other parent - no silverware or plates - and the inherent greediness of some to snag more than their share of rations. We are all mostly exhausted and have little to spare in terms of comfort or patience - and yet it happens. You see connection. You see empathy. You see comfort and help. Extra fruit is shared, hugs are given...lots of advice and shared experience.

Mik now has the electrodes off....there are welts and pus on her forehead looking like giants pimples. Her hair looks like she was in an electric socket - but she has the most incredible smile at going home. It is a day later than we is not definitive as we expected....but it is relieving......

PS This says Mar 31st so it was actually the day after.......but the results felt the same....

Saturday, March 27, 2010

It seemed so long ago that this date was set. March 29th seemed so far away. It is upon us Monday and donned with games, food, treats and books she will be admitted to Video EEG monitoring until they have a complete look at her brain. She will also lose all privacy for a few days. Not that she has had that much since last year. But this is recorded. Nose picking, scratching, eye rolling at people's jokes can be recalled at any moment.

Each time we are admitted our list of what to bring grows. Soft Kleenex, baby wipes, water bottles.....they all join the trunk that we will lug to 3R. Along with this is the raw emotion from lack of sleep - the trepidation at the invasiveness of what this might mean - and the hope that the EEG confirms what the doctors already believe so that we can move on with a plan.

But, a Lobectomy is a serious decision. A Lobectomy means they will take out part of her brain. A Lobectomy is irreversible. The weight of that decision is hard for us all. There are so many questions we dare not ask - but hang in the air. Could she change? Could this hurt her? I stop right now. I have to. I cannot think that far ahead. I have to survive this next week first. I have lots of distractions. I will be the purveyor of healthy food, the challenger of games, and there when she will have a seizure or needs a hug.

I know that I do not really know how much she has gone through. I cannot possibly walk in her shoes. She sat through all the discussions. The unspoken fears sat with us. We are just facing today right now and the list that needs to get packed. I will post the results - and maybe a few really embarassing pictures for your viewing pleasure. Of course as I say this I realize I am on video as well so I better watch where I scratch too!

Thursday, March 25, 2010

Today was another meeting with Neuroscience. This to determine how Mikaela's brain has recovered post-op, and also as a base-line should she require further surgery. The doctors confirmed what we already knew. We have been blessed with a wonderful, mature little girl. The last surgery, though invasive, has shown little affect to her brain. The noticeable area that seems to have been affected has been her spacial intelligence. At this she realized why trigonometry has suddenly sent her to tears. It was a huge sigh of relief for us all. For me, because she has needed me to explain math - and then re-explain again....for her....because it is just part of her healing.

The doctor showed me one of the tests she did and I was overwhelmed just looking at it....let alone having to copy and then remember it....Perhaps this is heredity? At any rate, on Monday morning Mik will be admitted for her Video EEG monitoring. she will be glued with wires.....apparently like a crazy glue (and if you know her curly hair you will certainly understand the trepidation)....and she will be wired up for a few days. If you are walking this with us...we will update you on where she is at. For now, we are walking into familiar territory. An EEG is not invasive. A video a little more so, but in her words " can watch my life in waves..." . For me I will be content with sourcing healthy, vegetarian food, playing crib and Rummikub, and sleeping in cat naps. Ken (aka Norman) is trying to get his band together to watch biker movies in her room. Won't that be a scream? Last time Ken, Jared and Billy came in mummy costumes after playing a Halloween gig at some local pub. The nurses loved it. So again - we will be the talk of 3R with people coming and costume....or without....but usually with a lot of laughter behind the doors. So much that a few of the nurses (Christine) came in just to hang out and laugh after work was over.

Tuesday, March 16, 2010

Thanks to Metro Don

This morning at the door was a box addressed to “Little Miss Motorcycho” from someone we have never met. Someone who lives thousands of miles away and yet has compassion on what is happening in her life. It was packed with care….suckers on the top, chocolate nestled between a T-Shirt, stickers with a hoodie….all prized by my teenager. The note attached told her that her “Daddy-o” had let them know she was still having medical issues and when he asked what he could do, “Daddy-o” suggested winning the Daytona race. Inside the box was the plaque of the 3rd place winner of the race – “National Vintage Dirt Track Championship Series” @ Daytona Speedway….1952-1968 (0-250cc) class…”

This road we have been walking since October has been hard. It has been full of tears, laughter, joy, fear, exhaustion…and also some great people who take the time to walk alongside us from thousands of miles away. Metro Don – How can possibly express my gratitude to you except to say when you are in Vancouver you have a place to stay and some coveted home made chocolate chip cookies. Mik is back at Children’s Hospital at the end of March and I am certain she will be donning a Metro hoodie and biting the head off those chocolate gators!!. Visit

Monday, March 15, 2010

The Funk

I have settled into a funk now.....and not the kind with the word "groovy" or "hip". The kind of funk I am in is the one that feels like you are struggling to breathe amidst the chaos of loud music and stale cigarette smoke. Most days it goes by unnoticed, until something snaps me into my reality. Only then do I want to sigh audibly and try to find some fresh air.

I was explaining this to my friend today. Trying to put into words the feelings that engulf me. She got it right away. She understood that even when everything is going great and there are no seizures....there is still the threat hanging over.

Mik had lay on the floor just as we were leaving for the dentist. My heart sinks as this is the posture I am familiar with. I expect we will be late until she gets up and had just been resting. I want to tell her to rest a different way. I want to let her know that her every move is under my scrutiny, and yet do I really want that for her? Do I want her to stop and think through all she does? She gets that I think something is wrong. "Next time I will give you a thumbs up when I lay there", is her solution. "That would work" I say, though really I will ask anyways. I know I will. I will try not to, I will try to find some other way to gauge where she is at....but finding none I will ask the inevitable question once again.

And so,I am here amidst the din and funk with a magnifying glass on Mik.....

Thursday, March 4, 2010

Crossword Puzzles

I was trying to understand my attraction and obsession with crossword puzzles I have had lately. I snuggled back in bed with tea and pen in hand long before dawn this morning and after a few questions I expected that I would not be able to answer much. I mean really, what is a noted tart thief? Is that from history or nursery rhymes? I press on a few to see if I answer any of the hundred and twenty five questions. A few easy ones come and provide more clues. The tart thief starts with a K now and I surmise that it might be a knave. I fill that in and see if it will aid with the ones around it. The V of knave seems to work with the sea dog’s oath – shiver me timbers…Slowly things are added, written over, filled in until I realize that the puzzle is done. There are a few changes because the clue was misread and some of the answers are only recognizable by me. But it is done. That Is my attraction to crossword puzzles. They are hard, they are frustrating, they don’t always choose the words or spellings that I would. Crosswords can use archaic vocabulary or spellings. But somewhere in my brain, I probably have a file that will recall that a juvenile newt is called an eft or that an Inuit knife is a ulu.. The satisfaction of completing a task I thought impossible twenty minutes before is probably the same reason that I continue to renew my subscription to the paper though I only skim the news now.